I knew very little about Anna Kennedy Online (AKO) when I first encountered the charity. Amazingly Anna remembered me from a talk I did years ago – she says “I was so pleased when Dr Luke Beardon agreed to be one of our Charity Patrons. I heard Luke speak many years ago when my boys had only both been diagnosed with autism a short while. I was totally blown away by his presentation and a lot of what was shared filled in a few gaps for me and that it wasn’t my fault that both my boys were on the spectrum and with the right support they could succeed in life and I saw light at the end of a very long dark tunnel.”
Anna came to Sheffield Hallam University to visit, and to discuss how we might work together. First off, I wanted reassurance that we were roughly thinking along similar lines – interestingly, Anna wanted the same reassurance! After lengthy discussion I believe AKO to be a charity that has its heart in the right place and strives towards a better understanding of autism, and thus a better life for autistic people. In terms of research AKO has the potential to open up participation to a wider audience than I would be able to within the confines of my own role which is of potential benefit to evidence based practice and increasing the autistic voice within research parameters. Along with Dr Nick Chown I have developed a framework for research purposes, and having tweaked it for more general autism related activities this framework asks the following questions:
- Does the activity aim to engage directly with the autism community?
- Does the activity respect autistic individuals and their potential needs?
- Does the activity have the potential to impact positively on autistic individuals and/or the wider autism community?
- Is the main purpose of the activity to directly or indirectly influence quality of life for the autistic population?
- Does the activity intend to establish new knowledge that can influence practice that will have a positive influence within the autism community?
- Might the activity enable practitioners to develop better practice?
- Are autistic people involved in the activity?
- Is the activity identified by the autism population as valued?
Not all of these questions can be answered at this stage in terms of intended activities with AKO (read on…!!!) – but in the main enough of the framework’s criteria are met to engage positively with AKO and work towards the above aims. Of course, we welcome approaches by any individuals or organisations who wish to join forces for positive action and have a history of doing what we can to engage with others in our work.
Links in the autism community are often fraught with concern. What if we disagree? What happens when we do disagree? Are there any right or wrong answers? Clearly, there are many, many conflicting views on autism and autism related practice. I fully accept this, and expect that views from associated organisations or people might fundamentally differ from my own – but see this as healthy in terms of adding to the debates and engaging with the wider community with inclusivity and transparency. While I might strongly argue my position and perspective – I also accept that working in isolation is a lonely and disadvantageous position. I want to engage with a wider population, with more individuals, with more organisations. Links with AKO are the starting conduits, I hope, to a much wider network of people and organisations that align with the above framework, and who want to work towards a society of inclusion and equality in the autism field.
This Blog is intended to engage with an International audience to promote evidence based experiences, research, and practice. It will provide a platform for people who may not otherwise have a voice to have their perspectives heard. It will, we hope, encourage debate, and increase understanding of best practice within the autism field.
One of the most exciting plans (certainly from my perspective) is to widen our networks as far as is possible to include as many autistic voices as we can in order to engage in genuine participatory research. I (we!) will be using this platform to promote participation in research studies – which as yet have not been identified, as it is the autistic population who should be identifying what research should take place. So, the first of the surveys will simply be asking as many people as possible who are autistic, what you believe should be researched, bearing in mind that this particular form of research will be survey based. This first piece of work is incredibly exciting – so please, WATCH THIS SPACE!!!
Following the data I will begin to identify what research I am able to engage with (along with autistic academics), based on the opinions of autistic individuals, parents, and others associated with autism. Hopefully this will be the start of a genuinely autism led participatory process which will get the autistic voice heard, loud and clear.